Did you know the MND Association supports people living with or affected by Kennedy’s disease as well as those with MND? Kennedy’s disease isn’t a type of MND, but the two diseases have similar symptoms, which can cause confusion at diagnosis. Kennedy’s is a rare condition and only affects an estimated 1 in 40,000 people.
Over the past few years, the Education and Information team has been making efforts to include Kennedy’s disease more in our information resources and other channels.
These efforts include a redeveloped information sheet about the condition and ways to manage symptoms, and a designated webpage in our revamped About MND area of the website. As well as this, we have been working to include relevance to Kennedy’s disease in our information resources, where appropriate.
Our efforts have recently been noticed by Kennedy’s Disease Raising Awareness – a Facebook group with members affected by Kennedy’s disease from across the globe. They commented particularly positively on Information sheet 2B – Kennedy’s disease, noting that the use of Plain English throughout was helpful.
We will continue to include references to Kennedy’s Disease as we revise and expand our provision.